Spiraling

As a primary care physician, I like my patients’ charts to be updated, without redundant or irrelevant information. So, before initial appointments with patients I “inherited” when I joined my current practice, I take some time to “clean up their chart.”

When patients have complex medical histories and medication lists, cleanup is challenging. But worth it. This process helps me build a two-dimensional picture of the patient, their disease trajectory, relationship with specialists, and longitudinal overall health. When I meet the patient, I can then focus on listening and observing and understanding them three-dimensionally.

One patient I inherited used substances for decades to numb her traumatic past. Today she is sober, but her organs are permanently damaged. When we met for the first time, I was struck by her fluency with medical jargon and her matter-of-fact descriptions of her medical history. She spends most of her day in a Barcalounger or her bed; her aide and her medical team are her few points of human connection. Breathing, eating, sleeping, and stooling aren’t easy for her. Yet she never complains.

Recently I noted that the interval between her hospitalizations has been shrinking. She presents to the ER in increasingly critical condition and is discharged with more potent medications. To improve her breathing, we give medications that tax her kidneys. When we adjust medications because of her kidneys, her breathing suffers. We then add new drugs, with new side effects. Medications treating constipation now cause diarrhea. Pain medications are sedating, which makes her fall when walking. At every visit I click the mouse to discontinue drugs and prescribe medications, seeking that magical combination. Her medications work until they don’t.

Given the severity of her condition, I’ve broached end-of-life discussions. What does she value? What gives her life meaning? Her pet rabbit. Occasional interactions with her family, from whom she is largely estranged. Her aide. She is not ready to acknowledge what I as her primary care physician understand: that increasingly frequent and serious hospitalizations signal that her health is worsening, and each hospital stay foreshadows her death. I smile at her via the computer monitor during our telehealth visit, attempting to steer her toward options that will improve her quality of life. Notifications of her hospitalizations gather in my inbox. I dread discovering news of a catastrophic medical event occurring or learning of her death.

For now, we forge onward together.

Pam Adelstein
Newton, Massachusetts